It's been awhile since I last posted but received news from my doctor a few days ago. Not good news but not bad news. I've been on Sprycel for not quite three years. I've always hoped that one of these appointments he would say that my BCR-ABL would be all zeroes and that one day I would be able to go off medication. While my numbers stay low he said they fluctuate enough that more than likely I would be on medication for the rest of my life. Taking the Sprycel has not been horrible by any means compared to going through intravenous chemotherapy or radiation like my sister did with breast cancer but being able to say I'm in remission would have been wonderful. I can't complain because I'm here seeing my grandkids grow up and she never got to meet her last grandson. Thank you to this group for sharing and listening.
He finally saw a pain management doctor. She sent him for blood work and told him he had to see the oncologist. He finally did that. The first blood work he has had done since he was in the hospital in December. His WBC was 78 and all of the wbc counts were out of range. The oncologist told him he was at high risk for a stroke and asked him if he wanted treatment or not. He said he wanted time to think. In the meantime he gave him HydroxyUrea to help get his WBC count down. He had labs repeated and he is still in the critical high level at 68.2. The lab was unable to perform a UA test because he had too much fat in the sample. The medicine has made him sick, bleeding gums, threw up blood, fatigue, back pain, headaches just to name a few symptoms. He said he would try the new medicine Scemblix and see what it does. He is only doing it because he is afraid of having a stroke. His blood sugar has been running high 300-400. He wont let me test him and said he isnt taking any meds to control it. Its an uphill battle!
Thank you for checking in with me. Its been helpful just knowing people care.
Thank you for all your information. It’s very helpful. Out primary care said he needed palliative care but that was months ago. My husband continues to he more fatigued and doesn't sleep well. He is not bruising and so far his platelets and RBC’s are within normal range. He has already said he won’t get blood transfusions. We should have his new BCR-ABL report back this week. I would like to know what phase we are in.
Hi @dgordillo. Just wanted to check in with you to see how you’re holding up and how your husband has been doing. Was he able to enlist the help of Palliative Care or Hospice? Any news on this BCR-ABL results?
Thank you for all your information. It’s very helpful. Out primary care said he needed palliative care but that was months ago. My husband continues to he more fatigued and doesn't sleep well. He is not bruising and so far his platelets and RBC’s are within normal range. He has already said he won’t get blood transfusions. We should have his new BCR-ABL report back this week. I would like to know what phase we are in.
My husband was diagnosed in 2019 with CML. Its been over two years since he has had any treatment. He just didn't like the TKI inhibitors. He had a lot of side effects and was pretty sick. Last year his oncologist said he wouldn't give him two years. He had to get blood work done before pain management would prescribe anything for him. He does have an appointment with his oncologist in August. His blood work shows his cancer is progressing. Im just wonder what to expect.
Hi @dgordillo, we’ve had quite a few discussions on your husband’s ongoing CML and his wishes to discontinue treatment. This puts you in a really difficult position and I know you’ve been struggling with how to help him with his constant refusal seeing a doctor or accepting any offers of help from you.
It’s a relief to see that he’s finally visiting with an oncologist in August. It looks like it’s just for the possibility of pain meds? Since the blood work he recently had may be showing signs of a serious progression of the disease, without treatment, it is just a matter of time.
You’re wondering what to expect as this progresses. CML has 3 phases. Chronic, Accelerated Phase and Blast Phase, when the disease now becomes acute. Basically CML morphs into AML (acute myeloid leukemia) Here’s a helpful link to read: https://www.cancer.org/cancer/types/chronic-myeloid-leukemia/detection-diagnosis-staging/staging.html
Your husband may have progressed to either the Accelerated or Blast stage where blast cells, (immature white blood cells) are slowly overtaking his blood. From my experience with AML, I can tell you that he will slowly become very weak and extremely fatigued. He may require blood transfusions to keep his red blood count up and possibly platelets as well. If your husband doesn’t get ill, this can be a quiet way to pass. I was less than 24 hours from pushing up daisies from the underside. I, quite frankly, would have just fallen asleep
The over proliferation of white blood cells at this time are blasts and they are ineffective cells. So his immune system will be severely compromised. He needs to be extra vigilant to avoid infections or illnesses whether food borne, bacterial, viral or fungal. So I’d suggest he wear a mask anytime he’s out in a public setting.
It’s a good idea to check his temperature daily. If he has a fever of 100.4 or higher he needs to call the oncologist or go to the ER. That can be a sign of an infection and with his immune system no longer functioning, that can take over rapidly. .
When you accompany your husband to the oncologist, this will be a good time for you and your husband to talk about the end of life discussion you and I chatted about previously.
The doctor will be able to offer either palliative care or hospice. You can’t do this on your own! Your husband may need more physical help than you’ll be able to give. So please, encourage him during this appointment to listen to the directives of his oncologist. They and their staff are best equipped to help both of you through this difficult time. Here’s a link to one of our discussions https://connect.mayoclinic.org/comment/1073334/
Is he showing any serious signs of fatigue or bruising?
My husband was diagnosed in 2019 with CML. Its been over two years since he has had any treatment. He just didn't like the TKI inhibitors. He had a lot of side effects and was pretty sick. Last year his oncologist said he wouldn't give him two years. He had to get blood work done before pain management would prescribe anything for him. He does have an appointment with his oncologist in August. His blood work shows his cancer is progressing. Im just wonder what to expect.
Since 7.8 is firmly in the normal range, my guess is that the question means what it said: 78. I vaguely recall someone on a cll list mentioning being treated when her wbc would get above 100. Or maybe I dreamed that.
Hi, @dgordillo Did you mean a WBC of 7.8? Is this from a differential CBC. Is there a breakdown of Absolute neutrophils, lymphocytes, monocytes, eosinophils and basophils?
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It's been awhile since I last posted but received news from my doctor a few days ago. Not good news but not bad news. I've been on Sprycel for not quite three years. I've always hoped that one of these appointments he would say that my BCR-ABL would be all zeroes and that one day I would be able to go off medication. While my numbers stay low he said they fluctuate enough that more than likely I would be on medication for the rest of my life. Taking the Sprycel has not been horrible by any means compared to going through intravenous chemotherapy or radiation like my sister did with breast cancer but being able to say I'm in remission would have been wonderful. I can't complain because I'm here seeing my grandkids grow up and she never got to meet her last grandson. Thank you to this group for sharing and listening.
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Helpful -
Hug
2 ReactionsHe finally saw a pain management doctor. She sent him for blood work and told him he had to see the oncologist. He finally did that. The first blood work he has had done since he was in the hospital in December. His WBC was 78 and all of the wbc counts were out of range. The oncologist told him he was at high risk for a stroke and asked him if he wanted treatment or not. He said he wanted time to think. In the meantime he gave him HydroxyUrea to help get his WBC count down. He had labs repeated and he is still in the critical high level at 68.2. The lab was unable to perform a UA test because he had too much fat in the sample. The medicine has made him sick, bleeding gums, threw up blood, fatigue, back pain, headaches just to name a few symptoms. He said he would try the new medicine Scemblix and see what it does. He is only doing it because he is afraid of having a stroke. His blood sugar has been running high 300-400. He wont let me test him and said he isnt taking any meds to control it. Its an uphill battle!
Thank you for checking in with me. Its been helpful just knowing people care.
-
Like -
Helpful -
Hug
1 ReactionHi @dgordillo. Just wanted to check in with you to see how you’re holding up and how your husband has been doing. Was he able to enlist the help of Palliative Care or Hospice? Any news on this BCR-ABL results?
Thank you for all your information. It’s very helpful. Out primary care said he needed palliative care but that was months ago. My husband continues to he more fatigued and doesn't sleep well. He is not bruising and so far his platelets and RBC’s are within normal range. He has already said he won’t get blood transfusions. We should have his new BCR-ABL report back this week. I would like to know what phase we are in.
Hi @dgordillo, we’ve had quite a few discussions on your husband’s ongoing CML and his wishes to discontinue treatment. This puts you in a really difficult position and I know you’ve been struggling with how to help him with his constant refusal seeing a doctor or accepting any offers of help from you.
It’s a relief to see that he’s finally visiting with an oncologist in August. It looks like it’s just for the possibility of pain meds? Since the blood work he recently had may be showing signs of a serious progression of the disease, without treatment, it is just a matter of time.
You’re wondering what to expect as this progresses. CML has 3 phases. Chronic, Accelerated Phase and Blast Phase, when the disease now becomes acute. Basically CML morphs into AML (acute myeloid leukemia) Here’s a helpful link to read:
https://www.cancer.org/cancer/types/chronic-myeloid-leukemia/detection-diagnosis-staging/staging.html
Your husband may have progressed to either the Accelerated or Blast stage where blast cells, (immature white blood cells) are slowly overtaking his blood. From my experience with AML, I can tell you that he will slowly become very weak and extremely fatigued. He may require blood transfusions to keep his red blood count up and possibly platelets as well. If your husband doesn’t get ill, this can be a quiet way to pass. I was less than 24 hours from pushing up daisies from the underside. I, quite frankly, would have just fallen asleep
The over proliferation of white blood cells at this time are blasts and they are ineffective cells. So his immune system will be severely compromised. He needs to be extra vigilant to avoid infections or illnesses whether food borne, bacterial, viral or fungal. So I’d suggest he wear a mask anytime he’s out in a public setting.
It’s a good idea to check his temperature daily. If he has a fever of 100.4 or higher he needs to call the oncologist or go to the ER. That can be a sign of an infection and with his immune system no longer functioning, that can take over rapidly. .
When you accompany your husband to the oncologist, this will be a good time for you and your husband to talk about the end of life discussion you and I chatted about previously.
The doctor will be able to offer either palliative care or hospice. You can’t do this on your own! Your husband may need more physical help than you’ll be able to give. So please, encourage him during this appointment to listen to the directives of his oncologist. They and their staff are best equipped to help both of you through this difficult time. Here’s a link to one of our discussions https://connect.mayoclinic.org/comment/1073334/
Is he showing any serious signs of fatigue or bruising?
My husband was diagnosed in 2019 with CML. Its been over two years since he has had any treatment. He just didn't like the TKI inhibitors. He had a lot of side effects and was pretty sick. Last year his oncologist said he wouldn't give him two years. He had to get blood work done before pain management would prescribe anything for him. He does have an appointment with his oncologist in August. His blood work shows his cancer is progressing. Im just wonder what to expect.
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1 ReactionI believe more information is needed before any opinions and/or more questions can be presented.
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1 ReactionYes, I meant 78 not 7.8. Here are the rest of the results.
Since 7.8 is firmly in the normal range, my guess is that the question means what it said: 78. I vaguely recall someone on a cll list mentioning being treated when her wbc would get above 100. Or maybe I dreamed that.
Hi, @dgordillo Did you mean a WBC of 7.8? Is this from a differential CBC. Is there a breakdown of Absolute neutrophils, lymphocytes, monocytes, eosinophils and basophils?